Showing posts with label disability identity. Show all posts

As one of the lucky ones who managed to wave a red flag with a large question mark while in womb, I probably don't realize how lucky I am (or was). The doctors who caught sight of fractures and healing fractures in an ultrasound were alerted that something was up. From there I imagine a plan was set into place, possibilities were considered, tests were proposed, and above all caution was urged towards its slow plodding momentum. Mere days after I popped into the world that red flag had toned down its alarm, there was now a name for the little piece of land I claimed: Osteogenesis Imperfecta type III.

Having spoken and met with many other O.I.'ers I know that this isn't the experience for many of you. I have read the other blog posts about babies who are taken away from parents accused of child abuse. I've seen the frantic facebook posts in many of the O.I. groups from parents, grandparents, aunts & uncles of those crowd-sourcing for resources to come to a diagnosis faster. Heard from parents about the months their family spent waiting for the results from the battery of tests, realizing that any result would bring some relief. All of this for the sake of a diagnosis, for clarity, for a label, for a definition, for answers that are a little less vague.

When people ask me if it matters whether or not they refer to "the thing that you have" as a condition, disease, illness, syndrome.. I am quick to respond "yes it matters a lot to me." Because of all that my parents went through, because of all that other babies with O.I. have gone through - yes it matters a lot to me.

But now that I am older and have grown out of the confines of those bullet-point symptoms of O.I. type III, I sometimes wonder if the labels only matter a lot to me because those around me have made it matter.
Something tells me that as a day old, or even as a one or two year old infant -- the idea that my upbringing was wrapped tightly around the fingers of a diagnosis was about as important as saying "excuse me" after I was burped. I simply had no clue. O.I. type III was important to my parents, my medical team, my care takers and those who loved me. Why? Because they were the ones who were responsible for my safety and wellbeing. And it probably wasn't until half-way through elementary school that I had some idea of why I should talk to my classmates about my differences. It was important to me because my teachers, classroom aide, and my parents said "this is a good idea for you."

To be totally honest, O.I. type III probably wasn't something I really considered a part of my identity until I began this blog in May of 2011. Up until that point it was just a way to take care of my medical needs. Now? Now I think it's something I'm fiercely over protective of not because I'm afraid of losing it, but because I know there is so much I have yet to learn and I stubbornly want to do it all by myself! (Picture the first time you are baking your family's secret recipe. You've done it so many times with your mom, your dad, or your grandparents -- but this time you demand total control. My family has done enough and all that they possibly can, now it's my turn to finish this off.)

Let's also keep in mind that for me the label O.I. type III and the label "disabled adult" are two very different concepts in my mind, at least for where I am right now! There are distinct values and experiences that define my identity as someone with O.I. type III, and a wholly separate experience that define my identity as someone who is disabled; what's important in this instance is that 90% of both of these identities are shaped by my own experiences, and how I have interpreted them. While there are many areas where these two identities overlap I think there is a lot of personal pride that I'm comfortable enough with myself, finally, to identify strongly with both.

This isn't meant to belittle the value of a medical diagnosis. It also certainly isn't meant to influence anyone in one way or another, this is just me trying to make sense of the jumble that is me inside my own head; and to think that this is only one slice of all there is to me!
But I will say that for the parents and family who are raising the child with O.I., go ahead -- cling to the diagnosis and consider everything that your child's medical team believes is best. Cling to those definitions and labels, do whatever you have to do to come out the other side of tomorrow with your sanity intact... but realize that eventually, if everything goes right, your job will come to an end at some point and the diagnosis won't be up to you to cling to anymore. Instead it'll be your child's decision to cling or mold, or set aside, or even toss it away. I don't know anything about parenting, it's true, but I do know that when that happens you've done something right.

During my time at conference I met many people around my age (20 - 30 somethings) who all, at one point or another, held a similar outlook as myself on being an O.I.'er: "When I was younger my parents took care of all of this stuff for me. I wanted nothing to do with this; now I'm older and I'm learning to have more responsibility.." Usually this comment was followed by some half downwards turn of the lip, a shrug of the shoulders, and an uncertain sigh.

It could be said that I am infamous for not wanting to own up to being an O.I.'er for most of my life. We could get into the psychology of how my parents raised me (and my two unaffected brothers), or we could talk about how Asian cultures generally view disability negatively, or I could talk about how being surrounded by non-O.I.'ers allowed me to easily shove this other side of me in a dusty corner under the bed. It then only reared its awkwardly painful head from the dust mites as necessary.

But what I actually wanted to talk about is how attending conference allowed me to understand what having O.I. means... in a way that I had been too afraid to recognize. At least 50% of having O.I. is associated with the genetic bone disorder, and being a person who is prone to fractures. This is the 'identity' that I accepted for the longest time ever, but it wasn't until I attended conference that I have only begun to get beneath the science and medical jargon. I think what I'm trying to say is that my identity doesn't need to be wrapped up in the experiences I have had - not completely anyway. Yes, I am someone who is fragile but that doesn't make my identity fragile! It seems almost silly and obvious for me to say this but when your experience of having O.I. is limited to hospital beds and x-ray machines - O.I. was/is just a symptom of who I am as a person. Many of the posts I have written in this blog are my ramblings that result in my juxtaposing being a wheelchair user, or a disabled young person next to various childhood or day-to-day experience I have had.

Have you noticed?

I am not sure that I have really ever gone into what being an O.I.'er means for me. Maybe, though, if you took snippets and sentences from an array of blog posts we might see an outline of what I think it means... but I have done a (splendiferous?) job of avoiding the topic dead on. It's a side of me that is incredibly vulnerable. I sit here typing this incredibly nervous just saying these words! I don't like not knowing aside of me, it makes me feel uncertain and there is a lack of confidence in my gut that is slowly erupting - but the difference this time is that instead of turning away from that discomfort I'll let it sit inside of me.. and I'll deal with it in small doses. Knowing that you are here reading this from afar or maybe from the next town over gives me comfort, so thanks for coming along on this adventure with me. Sorry, I don't have any liability papers for you to sign... hope you've got good insurance!

All kidding aside -- The truth is I don't know what having O.I. as a part of my identity means, at least not yet. (Hopefully I'll get there soon - and when I do like d'uh you're gonna hear about it..) At the conference I saw that people were at different stages with managing their O.I. There were parents who were helping their young children navigate elementary school, there were older women who were concerned about the effect menopause will have, couples who had questions about having a child, teenagers who struggled with bullying or dating, young 20 somethings who dreamed about their ideal jobs.. it's interesting, right? When we see O.I. as not just a symptom or a diagnosis, but something that is a part of our identity - it becomes something that we are less easily able to separate, to leave behind the hospital curtain. Each day of writing this blog O.I. seems to sidle up next to me and I have been trying my best to scoot away a bit. Sometimes I'm more successful at creating that distance than other days. Most days I probably am creating a rift between myself and that budding identity that may be causing more harm than good. It's apparent to me now that like magnets we are inseparable.

As I had mentioned in this post while reflecting about conference, O.I. is generally the last thing on my mind in my everyday life. Unless I have a fracture. I'm not saying that all of a sudden I'm going to be wearing a t-shirt that has O.I. on the front and a picture of a collagen mutation on the back.. I'm also not saying that this'll be the first thing that I bring up when meeting new people. It probably won't be on my mind on an everyday basis. What I am saying is that I have accepted that it is a side of me that has taken up more of me than I have allowed it to do. And in that sense is how I have probably been hurting myself. What right do I have to deny myself from... myself? That's just sad! But I am relieved and ecstatic to find out I have the full control of changing this course of action. One step at a time, slowly.  

So, what do I do now?

Recognizing that I am uncomfortable with this is probably a good first step. Trying to get my thoughts on it outside of my overly active-analytical brain is another good step. Beyond that? I hope to continue on the path that I'm on -- exploring new opportunities, being comfortable with my own uncertainties, and somehow in the explosion of those two things together.. learn more about my identity.   

If you are like me and you over-analyze everything until it is a mushy pulp, then maybe you are also confused about what it means to be a woman with a disability.

Before I begin: there are many other bloggers out there who focus solely on this topic, hundreds of articles, and academic research that is being done in this area. I am just going to attempt to fumble my way through what I think it means, or doesn't mean, or something..

*BIG SIGH* Here we go:

• I think it means that I am particularly hungry for all things self-empowering. If you asked me to define the word self-empowerment I might give you some vague definition that has to do with... achieving goals, self-motivation, confidence, and knowledge to tackle the challenge at hand. Throw that all into a pot, wave your magic wand and voila! 
• I believe it means I sometimes get condescending behavior and 'social norms' for how women are treated in society mixed-up, A LOT!
• It means that I have yet to find high heels that don't look totally goofy and dumb when I wear them sitting down.
• Being a young woman with a disability means I am, personally, staunchly averse to all behaviors related to "playing the victim" ... even when I may in fact be the victim in a situation, sometimes I would prefer to pretend that I actually am not.
• It means that via nature's natural roles I find myself easily able to listen and empathize with others.
• It means that it is important to me to be unafraid to take on leadership roles.
• It means that it is even more important for me to be able to speak-up!
• Sometimes I might misconstrue criticism as a personal fault, or as a fault of the disability - and be at a loss for what to do or how to respond. Many times I might be overly sensitive but you, of course, would never know.
• I often think about the way I adapt to situations and always leap at the accommodations that are the most elegant, diplomatic, non-confrontational, non-disruptive. 
• I sometimes wish to blend in.
• It is important to me that I know my choices, options, and how to access all of them. Also that they are easy to access and not a logistical pain. 
• It is important to me that others in my situation are given the same opportunities, same access, same boosts of encouragement. If they are not I automatically feel bad, that I did not do enough to help others achieve; part of my achievement means that others are also able to achieve.
• I get frantically nervous about whether common practices of chivalry are done out of social politeness or out of assumptions that I cannot fend for myself.
• I am naturally self-reflective and uncomfortable with some of the things that I discover about myself. Those thoughts hang out in my head for a while until something else 'more important' knocks it away. 
• It is important that someday I am comfortable with being vulnerable, because I have recently discovered that is a powerful experience. However it is something that I would rather first flee from than face. 

In what I am about to write I might be stating many erroneous generalizations and stereotypes... I assure you that I'm not doing it out of ignorance. And I can pinky-swear promise that I never mean to offend. This is just another blog post, and as usual, I am only writing from what I know and have experienced. (Can you tell that I am extremely nervous about the topic for today? Because I am). 

I'm not really sure what it is about Asian families or Asian-American families but many of our parents like to compare us to other children. Specifically, our parents like to compare us to other Asian kids within our own family, to the Asian kids of their friends, to our classmates who are Asian, to the Asian kid down the street, or compare us to the Asian kid (we don't even know) sitting two tables away at the Dim Sum table. These were the types of conversations that surrounded my dinner table, and after dinner table discussions:  
"Your brother scored a perfect SAT score so why can't you?"
"At the parent-teacher conference I heard [Insert Asian classmate's name] got top honors in science, she's so smart - why don't you be more like her?"
"Why don't you eat more vegetables and tofu? Look at how many vegetables she's eating."
"Look at how respectful he's being and how terrible your behavior is, be more like him." 

For many of my American friends/readers it might be difficult to understand this mindset, but for me and my brothers it was just a part of the culture and parenting-style. These conversations took on a this is the-way-things-are-done-in-our-family attitude; I am sure every household and family has some example of this, regardless of race, ethnicity, and culture. That's what makes your family your family. 
It seemed like whatever aspect of our identity our parents felt was most important to "shape-up and perfect" would be most likely to be critiqued, or sought out for comparison. Usually this was intellect, grades, work ethic, parental respect, physical appearance etc.